ISMP's Guidelines for Standard Order Sets

ISMP's Guidelines for Standard Order Sets.
Horsham, PA: Institute for Safe Medication Practices; March 2010.

To ensure the safety and effectiveness of standard order sets, this guide provides recommendations on content, design, approval, and maintenance.

Free full text (PDF)
http://www.ismp.org/Tools/guidelines/StandardOrderSets.pdf

Related article
http://www.ismp.org/newsletters/acutecare/articles/20100311.asp

AHRQ Pharmacy Health Literacy Center

AHRQ Pharmacy Health Literacy Center
This site provides pharmacists with recently-released health literacy tools and other resources and assistance from the Agency for Healthcare Research and Quality (AHRQ). These include:

1. Four health literacy tools for pharmacy.
http://pharmacyhealthliteracy.ahrq.gov/Sites/PharmHealthLiteracy/Default.aspx?pid=748

2. Resources for pharmacists interested in understanding more about health literacy.
http://pharmacyhealthliteracy.ahrq.gov/Sites/PharmHealthLiteracy/Default.aspx?pid=741

3. Discussion Group for pharmacists to exchange ideas and experiences with peers about health literacy challenges.
http://pharmacyhealthliteracy.ahrq.gov/Sites/PharmHealthLiteracy/Default.aspx?pid=743

What is Pharmacy Health Literacy?
Pharmacy health literacy is the degree to which individuals are able to obtain, process, and understand basic health and medication information and pharmacy services needed to make appropriate health decisions.

^Only 12% of adults have proficient health literacy (e.g., can interpret the prescription label correctly)

^Medication errors are likely higher with patients with limited health literacy, as they are more likely to mis-interpret the prescription label information and auxiliary labels

^Studies document an association between low literacy and poor health outcomes

Why is Health Literacy Important to Pharmacy?
º Pharmacists are responsible for making sure patients obtain the maximum positive health outcomes from their medications
ºº Pharmacists care for patients with low to high education levels, low to high incomes, and multiple races of people; all of whom may have limited health literacy
ººº Medication errors are likely higher with patients with limited health literacy
ºººº Studies document an association between low literacy and poor health outcomes
ººººº Pharmacists are one of the most accessible health care providers
ºººººº Addressing literacy is an important quality improvement effort


AHRQ Health Literacy Tools for Use in Pharmacies
Recognizing that pharmacies may need additional knowledge and assistance to improve their health literacy practices, the Agency for Healthcare Research and Quality (AHRQ) has developed four new health literacy tools for pharmacy:
► Pharmacy Health Literacy Assessment Tool & User's Guide
http://pharmacyhealthliteracy.ahrq.gov/Sites/PharmHealthLiteracy/Default.aspx?pid=748#Tool

►► Training Program for Pharmacy Staff on Communication
http://pharmacyhealthliteracy.ahrq.gov/Sites/PharmHealthLiteracy/Default.aspx?pid=748#Training

►►► Guide on How To Create a Pill Card
http://pharmacyhealthliteracy.ahrq.gov/Sites/PharmHealthLiteracy/Default.aspx?pid=748#Pillcard

►►►► Telephone Reminder Tool To Help Refill Medicines On Time
http://pharmacyhealthliteracy.ahrq.gov/Sites/PharmHealthLiteracy/Default.aspx?pid=748#Refill

Want to learn more about these tools? Go to: AHRQ Tools
http://pharmacyhealthliteracy.ahrq.gov/sites/PharmHealthLiteracy/default.aspx

Doctors fear work caps for residents may be bad medicine

Doctors fear work caps for residents may be bad medicine.
Shapira I. Washington Post. March 18, 2010;B01.

This news piece examines the work week of resident physicians and discusses how further limiting trainees' work hours might reduce their experiential learning.
http://psnet.ahrq.gov/resource.aspx?resourceID=17833



Cap on doctors' work hours could get tighter
The workload of medical residents has long stoked controversy, especially since 2003, when they were capped for the first time to an average of 80 work hours a week to reduce fatigue and errors. Now that cap could be tightened to 60 hours.


Doctors fear work caps for residents may be bad medicine
By Ian Shapira
Washington Post Staff Writer
Thursday, March 18, 2010

A few months ago, Glen Silas, 40, an obstetrics and gynecology doctor at George Washington University Hospital, wanted a young resident to observe a sophisticated procedure in which a renowned laparoscopic surgeon was operating on a uterine tumor. Silas was certain the resident would eagerly embrace the opportunity.

But as doctors gathered in the staging area, the resident declined, telling Silas, "I am at the end of my shift anyhow, so I will see it another time."

"Even those at the attending level still learn from this surgeon, so for a resident to say that . . . is a special thing," Silas said. "I just told the resident, 'Wow. That is disappointing that the restrictions on your hours keep you from participating.' I don't even think I got a response."

Since 2003, when an 80-hour-a-week cap was placed on the nation's medical residents, many older physicians have worried that the next generation of doctors won't have seen enough patients and done enough procedures, even as residents continue to complain that working so many hours without sleep diminishes their ability to absorb lessons and avoid errors.

Now, the group that governs residency programs is considering even tighter limits, possibly down to 60 hours a week, leading some older doctors to argue that constant baton-passing by shifts of residents can disrupt patient care.

The changing shape of medicine's boot camp has fostered a generational tension between baby boomers and Generation-Xers, who trained in an era of 36-hour shifts and 120-hour workweeks, and millennials, the young doctors who have come up in a time of heightened concern about the impact of marathon work shifts.

"We hear about it all the time from attending physicians," said Xiaomang Ba, 29, an OB-GYN resident at George Washington. "They just say, 'Ignore your family for the entire weekend.' It sounded like people didn't really have a life [under the old rules]. It's all joking, 'Oh, you guys have it so cush. . . . I can stay awake for 40 hours straight, can you?' But once you go past a certain number of hours, you stop learning."

Under the existing work limits, some residents say they feel as if they are sneaking around if they stay late to observe an interesting operation. Rachel Seay, 29, a George Washington first-year resident, said she usually works 70 to 75 hours a week but sometimes stays beyond her shift to take part in procedures involving fetal abnormalities.

Someone will ask, " 'Aren't you supposed to go home?' and you say, 'I am not here,' " Seay said.

The issue of work hours can be so sensitive for fourth-year medical students, who find out in Thursday's annual "Match Day" ritual where they will serve their residencies, that they can be reluctant to ask about it in job interviews. Not one of the 90 candidates for George Washington's OB-GYN residency this year dared to mention duty hour limits, said Nancy Gaba, the school's OB-GYN residency program director.

Gaba said young doctors seem hesitant about diving in to the intense life of a resident. "You used to work 120 hours a week," she said. "Now you get a different kind of person. They're somewhat protected; the lifestyle has changed. These poor residents are in the middle of two competing [realities]: If you're fatigued, you're not taking good care of patients, but you're also not learning anything."

Doctors and patients also worry that shorter hours mean that patients will see a longer procession of doctors and, thus, that there will be more opportunity for errors. On Friday morning inside GWU's labor and delivery unit, Elizabeth Gray walked the halls with her husband, nervously hoping that her baby would be delivered by Seay, the first-year OB-GYN whose shift was to end Saturday morning.
http://www.washingtonpost.com/wp-dyn/content/article/2010/03/17/AR2010031704006.html?sid=ST2010031804586

Down the hallway, Seay was not optimistic that Gray, herself a resident in internal medicine, would deliver during her shift. "Sometime tomorrow," she said, guzzling the first of eight cups of coffee she requires to survive a 27-hour shift. "She's, like, at one centimeter."

Three hours into her shift, Seay had already taught a medical student how to take a sonogram, assessed various patients' drug needs and was preparing to perform a circumcision, adding to her tally of more than 40 such procedures in her nine months as a resident.

"It's the 1 a.m. to 4-ish range when I hit a wall," she said. "Eat when you can; sleep when you can."

John W. Larsen, 67, GWU's OB-GYN department chairman, said he worries that reduced hours have diminished new doctors' training. Residents who stay with one patient from their arrival at the hospital all the way through to delivery have the advantage of detecting and recalling tiny but important clues that might not be written down when a case is handed to the doctor on the next shift.

"You could remember things," he said, recalling how abdominal infections have been found in women who have just delivered. "Did the patient have three wrinkles on her forehead when you pressed her tummy?"

Still, he has trouble persuading younger audiences that his war stories amount to a better way of training doctors. "The kids, they don't want to hear it," said Larsen, who was a resident in the early 1970s at Yale-New Haven Hospital.

At the end of April, the Accreditation Council for Graduate Medical Education , which determines work rules for residents, will unveil a proposal that could further shorten workweeks. If approved, the new rules would take effect in July 2011.

Thomas Nasca, the council's chief executive, said he is not certain what the new rules will be. At George Washington, some officials who run the residency programs are so sure the new limit will be 60 hours a week that they are setting up a pilot program to test the impact of a lower cap.

"What's being discussed is 60 hours a week and that no shift would be more than 16 hours," said Gigi El-Bayoumi, director of GW's internal medicine residency program. Best-selling author "Malcolm Gladwell talks about the whole idea of 10,000 hours as a way of mastering a topic. So with that in mind, I actually looked at how many hours I did as a resident versus the current rules and the proposed rules. In my training, it was 15,000 hours. Now, it's about 8,000 to 9,000. And if [the new limit is] 60 hours, it'll be close to 6,000."

The result, she fears, could be that residents finish their programs with a sense that they need more training, leading them to pursue fellowships in more esoteric specialties and exacerbating the shortage of doctors in internal medicine. Alternatively, hospitals might extend residency programs by a year or two.

At 1:09 a.m. Saturday, Gray surprised Seay by giving birth while the resident was on duty. Gray was relieved that it was Seay who delivered Oliver Leith Kovel, at 7 pounds and 12 ounces.

"It was nice because we had met before," Gray said several hours after the delivery. "She had advocated for me to get an epidural, and I wasn't sure, because I thought it would slow me down. I felt like she was on our side. I got lucky because I delivered in her window."

Around 8 a.m., with about an hour left on her shift, Seay looked weary. She had had about 90 minutes of sleep overnight. Having downed all eight cups of her homemade coffee, she resorted to a Starbucks latte. "Elizabeth did really well," she said. "I didn't think she was going to deliver."

She sped on to her next patient. "If I don't move, I'm going to sleep or die. Gotta move, gotta move."
http://www.washingtonpost.com/wp-dyn/content/article/2010/03/17/AR2010031704006_2.html?sid=ST2010031804586

AHRQ's Health Services Research Career Development Grant Program: New Starts

AHRQ's Health Services Research Career Development Grant Program: New Starts
Fiscal Year 2009

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This program brief describes AHRQ's grant program for health services research career development awards in three areas: the Mentored Clinical Research Scientist Program (K09), the Mentored Research Scientist Program (K01), and the Independent Scientist Award Program (K02). Career development awards made by AHRQ in FY 2009 are briefly described, and contact information is provided for specific programmatic questions.

Select to download print version (PDF File, 400 KB). PDF Help.
http://www.ahrq.gov/fund/training/cdgrants09.pdf
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Contents
Introduction
Mentored Clinical Research Scientist Program (K08)
Mentored Research Scientist Program (K01)
Independent Scientist Award Program (K02)
More Information

Introduction
The mission of the Agency for Healthcare Research and Quality is to improve the safety, quality, efficiency, and effectiveness of health care for all Americans. To help achieve the Agency's mission, AHRQ supports extramural research grants and contracts, research training, conference grants, and intramural activities.

AHRQ is committed to the development and nurturing of a cadre of clinical and research scientists who will focus their time and expertise on some of the most important problems facing our Nation's health care system. Toward this goal, AHRQ provides support for three career development programs. Each of these programs provides salary support for junior faculty or applied researchers, emerging leaders in the field, and/or those in career transition for an intensive research career development experience in health services research. AHRQ's three career development programs are:

.The Mentored Clinical Research Scientist Program (K08) provides support for a period of 3 to 5 years to individuals with a clinical doctoral degree. These individuals participate in a supervised research career development experience in health services research. The award can be used both by individuals who are new to heath services research training and those who have had a hiatus in their research careers because of illness or family circumstances.
..The Mentored Research Scientist Program (K01), which parallels the K08 program, is geared toward individuals who have research doctorates. This new program was initiated by AHRQ in FY 2009.
...The Independent Scientist Award Program (K02) fosters the further development of new health service researchers by offering them the potential to expand and make significant contributions to their field of research. The K02 award provides 3, 4, or 5 years of salary support and "protected time" to devote to their rersearch and career development.

In FY 2009, AHRQ awarded 32 career development grants, which are described here. Each entry includes information on the grantee and his or her research focus.

open here to see the full-text:
http://www.ahrq.gov/fund/training/cdgrants09.htm

Por qué Importa la Investigación de las Enfermedades Raras

Por qué Importa la Investigación de las Enfermedades Raras
INFORME ESPECIAL



¿Por qué invertir en investigación de enfermedades raras? Esta es la premisa básica del informe de posición en el que actualmente está trabajando EURORDIS. Durante muchos años, EURORDIS ha abogado por una mayor y mejor investigación en el campo de las enfermedades raras, describiendo las necesidades de los pacientes y explicando el valor añadido de los esfuerzos de investigación coordinados a nivel europeo. EURORDIS ha tenido la oportunidad de proporcionar a la Comisión Europea recomendaciones específicas que reflejan las necesidades de los pacientes de enfermedades raras. Estas necesidades y prioridades están ya recogidas en anteriores Documentos de Posicionamiento de EURORDIS y reflejados en la Comunicación de la Comisión sobre Enfermedades Raras, la Recomendación del Consejo para la Acción en el campo de las Enfermedades Raras, y los programas Marco para la Investigación de la Comisión Europea 6PM y 7PM.

Hoy, EURORDIS está actuando para recordar a los diseñadores de política que conocen las desventajas que afronta el campo de la investigación de enfermedades raras (y educar a los que todavía no son conscientes de ello), el interés que tiene la investigación de las enfermedades raras, y del valor añadido, al asignar un presupuesto específico en investigación a este amplio grupo de enfermedades. Se presentó un primer Documento de Debate sobre este tema a investigadores y diseñadores de política con motivo del Taller Europeo del Día de las Enfermedades Raras en Bruselas el 1 de marzo. EURORDIS está consultando ampliamente a los grupos de pacientes miembros, además de líderes científicos y personas clave para así convertirlo en un Documento de Posicionamiento de referencia.

“Aunque queda claramente identificado como un área de prioridad en investigación en la Comunicación de la Comisión y la Recomendación del Consejo sobre Enfermedades Raras, todavía estamos lejos de tratar las necesidades de los pacientes. En mitad del 7PM para la Investigación y preparando el 8PM, y mientras se trabaja en los planes nacionales en todos los Estados Miembros”, explica el director ejecutivo de EURORDIS Yann Le Cam, “tenemos más que nunca la urgencia de defender la investigación de enfermedades raras y promover la investigación de las enfermedades raras a niveles más altos en la UE y en las agendas nacionales; y dar a la investigación de las enfermedades raras el presupuesto y la atención que merece.”





La base de una respuesta específica sobre la investigación de enfermedades raras es la misma que la utilizada en la defensa del acceso igualitario a la asistencia de calidad y a los tratamientos en comparación con otros pacientes en Europa. Se basa en los principios de igualdad, justicia social y solidaridad: cada uno hace un llamamiento para la acción duradera en favor de los miembros vulnerables de la sociedad, en este caso los pacientes de enfermedades raras.

Los beneficios de una colaboración y coordinación específica dirigida son obvios y urgentes en el campo de la investigación de las ERs, debido a la baja prevalencia de las ERs, su complejidad y enfoque multidisciplinar, la naturaleza dispersa de los proyectos de investigación actuales y la escasez de información sobre cada uno de ellos. Los mecanismos de financiación tradicionales basados en las condiciones de mercados naturales y fondos públicos no se adaptan a la realidad de los requisitos de la investigación de ERs. Ahora resultan imprescindibles una financiación pública específica, una estrategia y acciones para la investigación de ERs.

Debería destacarse el florecimiento en los últimos años de la biotecnología, gracias en parte a los incentivos incluidos en el Reglamento UE de Medicamentos Huérfanos de 1999. Desde el 6PM, la CE también ha reconocido la investigación de las ER como prioridad, como queda reflejado en los últimos Programas Marco sobre Investigación y Desarrollo. Todo esto realza la competitividad de la UE en una sociedad basada en el conocimiento. Pese a estos esfuerzos, todavía existen vacíos en el campo de la investigación de las ERs.

Las enfermedades raras pueden tener consecuencias positivas para una comunidad más amplia. La investigación de las enfermedades raras hace avanzar la investigación médica en general. El progreso científico y médico ofrece nuevas oportunidades en el campo de la investigación de las enfermedades raras; a su vez las enfermedades raras han hecho importantes contribuciones a la investigación y descubrimientos de tratamientos para enfermedades más comunes. Además, la investigación de ERs está en la vanguardia de las técnicas innovadoras y nuevos enfoques de medicinas, como por ejemplo la medicina personalizada.

Además, la investigación de ERs es un laboratorio de nuevas políticas de asistencia sanitaria. El trabajo hecho en los centros de expertos de ERs y por las redes de referencia europeas, marcan el camino hacia una nueva organización de sistemas sanitarios que optimizan el uso de recursos existentes.



Por último, pero no menos importante, el peso de las enfermedades raras en cuanto a sufrimiento y pérdidas de vidas humanas es enorme. De la misma manera no olvidemos el ahorro del coste sanitario si el diagnóstico se hace a tiempo y con el tratamiento correcto. Un paciente afectado por una enfermedad rara, cuando es tratado de forma adecuada, deja de ser un consumidor de tratamientos caros y no efectivos y se convierte en un ciudadano que contribuye de forma más activa en la sociedad.

Todas estas razones descritas exigen más financiación pública para estimular la investigación en el campo de las enfermedades raras.

“La experiencia nos muestra que los esfuerzos actuales no son suficientes. La financiación pública debe estar basada en un entendimiento de las necesidades específicas en el avance de la investigación de ERs,” argumenta el director ejecutivo de EURORDIS, Yann Le Cam. “Así se deduce que es necesario crear presupuestos específicos y estrategias políticas para la investigación de las enfermedades raras”.

Para más información:
Leer el Documento de debate “¿Por qué Invertir en Investigación de las Enfermedades Raras?"
http://www.eurordis.org/publication/why-invest-research-rare-diseases

Este artículo apareció previamente en el número de abril de 2010 de nuestro boletín de noticias

Autor: Paloma Tejada
Traductor: Conchi Casas Jorde
Fotos: © Inserm
http://www.eurordis.org/node/1106




Why Rare Disease Research Matters
SPECIAL REPORT

Why invest in rare disease research? This is the basic premise behind a position paper that EURORDIS is currently working on. For many years, EURORDIS has advocated for more and better research on rare diseases by describing the needs of patients and explaining the added value of coordinating research efforts at the European level. EURORDIS has had the opportunity to provide the European Commission with specific recommendations that reflect the needs of RD patients. These needs and priorities are already summarised in previous EURORDIS’ Position Papers and reflected in the Commission Communication on Rare Diseases, the Council Recommendation for Action in the field of Rare Diseases, and the European Commission Research Framework programmes FP6 and FP7.
http://ec.europa.eu/health/ph_threats/non_com/rare_10_en.htm

Today, EURORDIS is taking action to remind those policy makers who know, and educate those who are not yet aware, of the disadvantages faced in the field of RD research, the interest of RD research, and the added value of allocating a specific research budget to this broad group of diseases . A first Discussion Paper on this subject was presented to researchers and policy makers on the occasion of Rare Disease Day European Workshop in Brussels on 1st March. EURORDIS is taking the time to consult broadly its patient group members, as well as scientific leaders and key partners in order for it to become a reference Position Paper.
http://www.eurordis.org/content/european-workshop-rare-disease-research





“While being clearly identified as a research priority area in the Commission Communication and Council Recommendation on Rare Diseases, we are still far from addressing patients needs. In the midst of the 7th Research FP and in preparation of FP 8, and while working on national plans in all Member states”, explains EURORDIS CEO Yann Le Cam, “We are more than ever urged to make the case of rare disease research and to promote RD research higher and higher in the EU and national agendas; and to give RD research the budget and the attention it deserves.”

The rationale of a specific response on RD research is the same as the one used in advocating for equal access to quality care and treatments as compared to other patients in Europe. It is based on the principles of equality, social justice and solidarity: each calls for accrued action in favour of vulnerable members of society, in this case RD patients.

The field of RD research is one in which the benefits of specific and targeted coordination and collaboration are obvious and pressing, owing to the low individual prevalence of RDs, their complexity and multidisciplinary approach, the scattered nature of current research projects and the scarcity of the information about each of them. Traditional funding mechanisms based on natural market conditions and public funds are not adapted to the reality of RD research requirements. Specific public funding, strategy and actions for RD research are now an imperative.

It should be pointed out that there has been a blossoming of biotech technology in recent years, thanks in part to incentives included in the 1999 EU Regulation on Orphan Drugs. Since FP6, the EC has also recognised RD research as a priority, as reflected in its latest Research and Development Framework programmes. All this enhances EU competitiveness in a knowledge-based society. Despite these efforts, gaps in the field of RD research remain.




Rare diseases can have positive consequences for the wider community. Research on rare diseases advances medical research in general. Scientific and medical progress offers new opportunities in the field of rare disease research; rare diseases have in turn made major contributions to research and treatment discoveries for more common diseases. Moreover, RD research is at the forefront of innovative techniques and new approaches to medicines, such as personalised medicine.

Furthermore, research on RDs is a laboratory for new health care policies. The work done on RD centres of expertise and European reference networks are leading the way towards a new organisation of health systems which optimises the use of existing resources.

Last but not least, the burden of rare diseases in term of suffering and human life loss is enormous. Similarly, let’s not forget the savings in healthcare costs of timely diagnosis and correct treatment. A patient affected by a rare disease, when properly treated, stops being a consumer of expensive and ineffective treatment and becomes a citizen contributing more actively to society.

All of the reasons described above call for more targeted public funding to boost research in the field of rare disease research.

“Experience has shown that current efforts do not suffice. Public funding must be based on an understanding of the specific needs in the advancement of RD research,” argues EURORDIS’ CEO Yann Le Cam. “So it should follow that specific budgets and policy strategies for RD research need to be created”.

For more information:
Read the Discussion Paper “Why Invest in Research on Rare Diseases?"

This article was first published in the April 2010 issue of the EURORDIS newsletter

Author: Paloma Tejada
Photo credits: © Inserm

PRESENTATIONS
open here please:
http://www.eurordis.org/content/european-workshop-rare-disease-research

Research activities in Europe: Trends and determinants
Presented by: Ségolène Aymé, Director of Orphanet
http://download.eurordis.org/documents/pdf/1_%20ayme_RDD2010.pdf


“The E-Rare Network”: Results from survey on scientists’ and policy-makers’ research priorities in the field of rare diseases
Presented by: Manuel Posada, Instituto de Salud Carlos III, Spain, for The E-Rare Network
http://www.eurordis.org/sites/default/files/publications/2_manuel_PosadaRDD2010.pdf


Role of Patient Groups in Research and their Priorities for the Future
Presentation of results of a survey on the role of Patient Groups in Research and their priorities for the future
Presented by: Fabrizia Bignami, Therapeutic Development Director of Eurordis
http://www.eurordis.org/sites/default/files/publications/3_FBignami_RDD2010.pdf


The European Commission in rare disease research: Rare diseases in the 7th EU Framework Programme for Research and Technological Development
Presented by: Manuel Hallen, Head of Unit – Medical & Public Health Research - DG Research, European Commission (EU)
http://www.eurordis.org/sites/default/files/publications/4_Hallen-RDD_2010.pdf



“E-Rare”: Networking research programmes on rare diseases in Europe
Presented by: Sophie Koutouzov, E-Rare Coordinator
http://www.eurordis.org/sites/default/files/publications/5_koutouzov_RDD2010.pdf


EUROPLAN – Presentation of the Recommendations to support Rare Disease Research through National Plans and Strategies
Presented by:Domenica Taruscio, Instituto Superiore di Sanita, EuroPlan Project Leader
http://www.eurordis.org/sites/default/files/publications/6_Taruscio_RDD_2010.pdf

More information on the event:

Programme

Background on the event

Patients & Research:
View the results of the EURORDIS Survey of European Patient Organisations
http://www.eurordis.org/content/european-workshop-rare-disease-research

Análisis del perfil de la persona que llama a la Red Europea de Líneas de Ayuda de Enfermedades Raras

Análisis del perfil de la persona que llama a la Red Europea de Líneas de Ayuda de Enfermedades Raras
NOTICIAS



¿Quién llama a las líneas de ayuda de la Red Europea de Líneas de Ayuda de Enfermedades Raras?

La Red Europea de Líneas de Ayuda de Enfermedades Raras (ENRDHLs) es una iniciativa de EURORDIS que tiene por objeto aumentar la cantidad y calidad de los servicios de información de las enfermedades raras. Y esto lo hace compartiendo herramientas técnicas y recursos de información entre los miembros. Una de las acciones de la red, que requiere la participación de todos los miembros una vez al año, es el Análisis de la Persona que llama (CPA, siglas en inglés). Este año han participado cuatro nuevos servicios de información, de Rumania, Portugal, Bélgica e Italia.

¿Qué es el Análisis del Perfil de la Persona que llama?

El Análisis del Perfil de la persona que llama consiste en recoger ciertos datos básicos de todas las líneas de ayuda miembros durante un período predefinido y centralizar los datos a nivel europeo. Dependiendo de la calidad de los datos recibidos, los coordinadores de la red pueden así hacer informes a nivel europeo basados en los análisis de las llamadas a las líneas de ayuda. Este análisis varía desde una proporción muy básica de varones y hembras que utilizan el servicio a modelos predictivos más avanzados que muestran nuevas tendencias de las necesidades de los pacientes de enfermedades raras en Europa. Los datos también ayudan a convencer a quienes toman las decisiones sobre el valor añadido de los servicios de las líneas de ayuda y de la red en conjunto.

Es el tercer año que ENRDHLs lleva a cabo este tipo de análisis. Ocho líneas de ayuda participaron este año, entre las que se encuentran:
Francia- Maladie Rare InfoService, Francia- AFM, España- Feder, Bélgica- Radiorg, Portugal- Rarissimas, Rumania- Information Center for Rare Genetic Diseases, Dinamarca- CSH, Italia- Uniamo.

Durante un mes se recoge cierta información básica, como la ‘Clase de la persona que llama’, ‘Motivo de la llamada’ y ‘Respuesta dada’ que se centralizada en EURORDIS.

Este año las consultas combinadas, durante el mes de noviembre, de todos los participantes representaron 1128 preguntas, que recogieron 25 líneas de ayuda.





El informe resumen del CPA muestra las razones principales que empujan a las personas a utilizar los servicios. Claramente, la principal necesidad de las personas que llaman es la información sobre la enfermedad. Junto con la asistencia social y la orientación, éstas son las tres razones más importantes para contactar con el servicio. “Este tipo de información puede resultar muy útil cuando se ‘empieza’ una línea de ayuda a la hora de decidir qué tipo de servicio se va a dar,” explica Shane Lynam, Coordinador de Política Sanitaria de EURORDIS. “¿Quieren, por ejemplo, dar un servicio orientado más hacia la información médica y contratar a un profesional sanitario especializado o les preocupan más las cuestiones sociales? Cuando se toman este tipo de decisiones es conveniente saber las necesidades de las personas que llaman y dependiendo de las que sean, adaptar el proyecto.”

Los pacientes representan sólo la mitad de las consultas recibidas en los servicios, la otra mitad son o bien de amigos, familiares o de profesionales sanitarios.

El informe también muestra que aunque la comunicación electrónica (el 22% de las preguntas) está llegando al nivel de los contactos telefónicos (el 33% de las preguntas), el método más popular sigue siendo la comunicación oral. Esta recurrente tendencia muestra que los servicios vía correo electrónico y telefónico son complementarios. El 86% de los pacientes que llaman a servicios de líneas de ayuda europeas son mujeres. Esto parece indicar que las mujeres suelen tomar la iniciativa a la hora de buscar información sobre la enfermedad de su ser querido.

Después del análisis del grupo, todas las líneas de ayuda participantes reciben un informe referente a la calidad de los datos del perfil de la persona que llama y los cambios que hay que hacer para facilitar la normalización de los datos.

“Al participar este año en el Análisis del Perfil de la Persona que llama nos vimos obligados a pensar sobre el tipo de información de llamada que incluimos en nuestra base de datos en Radiorg,” comenta Lut De Baere, Presidenta de la Alianza Belga de Enfermedades Raras y línea de ayuda RadiOrg [http://www.radiorg.be/]. “Sobre la base del Informe CPA que recibimos, ya estamos haciendo cambios en la información que anotamos respecto cada consulta que recibimos, por ejemplo, hemos empezado a anotar el ‘código’1 de la enfermedad cada vez que incluimos el nombre de una enfermedad. Este tipo de observaciones serán de utilidad cuando hagamos la descripción del proyecto para un futuro proyecto de línea de ayuda.”



La solicitud vía web de EURORDIS de una línea de ayuda, denominada Rapsodyonline, ha sido diseñada para que los informes del grupo puedan hacerse de una manera más sistemática. Las líneas de ayuda exportarán sus datos a la base de datos de la red, donde se recogen, y los informes de actividad de la red se crean de forma automática. Como cada vez hay más servicios que utilizan la herramienta Rapsodyonline [http://www.rapsodyonline.eu/], los datos se harán más sólidos y los resultados tendrán incluso más peso. Los informes pueden ajustarse de manera que reflejen las necesidades de las distintas partes interesadas.

Este tipo de análisis puede ser utilizado por los coordinadores de la red para luchar por el desarrollo y financiación de servicios nacionales de líneas de ayuda. Mostrando el promedio de llamadas que son grabadas por cada persona que responde, es posible presentar datos concretos sobre qué necesidades deben ser financiadas. Esta información puede ser fundamental en el caso de que un posible patrocinador no tenga una idea clara de lo que implica un servicio de línea de ayuda.

Todos los miembros de la red acudirán a la reunión de ENRDHL el día 13 de mayo, donde entre otros asuntos, se debatirá sobre el próximo Análisis del Perfil de la Persona que llama. La reunión, que es una reunión satélite de la Conferencia Europea sobre Enfermedades Raras de Cracovia los días 13-15 de mayo 2010, servirá para que los participantes conozcan otras formas de trabajo y para debatir sobre las orientaciones futuras de la red para una mejor calidad de los servicios de información proporcionados.

Para participar en el próximo CPA o apuntarse en el Taller, por favor contactar con: shane.lynam@eurordis.org.

Para más información:
Resumen del Perfil de la persona que llama 2009
http://stars.eurordis.org/publication/caller-profile-analysis-summary-2009

Red Europea de Líneas de Ayuda de Enfermedades Raras – Manual de Solicitud de Afiliación
http://img.eurordis.org/newsletter/pdf/feb-2010/annexes/ENRDHLS_Network_Application_handbook.pdf

Red Europea de Líneas de Ayuda de Enfermedades Raras – Formulario de Solicitud de Afiliación
http://img.eurordis.org/newsletter/pdf/feb-2010/annexes/ENRDHLs_Application_form.pdf

Hoja Informativa de las Líneas de Ayuda de Enfermedades Raras
http://www.eurordis.org/publication/national-help-lines-rare-diseases

Hoja Informativa sobre la Red Europea de Líneas de Ayuda de Enfermedades Raras
http://www.eurordis.org/publication/european-network-rare-disease-help-lines

1Orphanet [http://www.orpha.net/consor/cgi-bin/index.php] es una base de datos europea de información sobre enfermedades raras. A cada enfermedad rara se le proporciona un código que corresponde con la 10ª clasificación internacional de enfermedades establecida por la OMS (disponible allí).

Este artículo apareció previamente en el número de abril de 2010 de nuestro boletín de noticias

Autor: Shane Lynam & Paloma Tejada
Traductor: Conchi Casas Jorde
Fotos: © EURORDIS
http://www.eurordis.org/node/1100




The 2009 Caller Profile Analysis of the European Network of Rare Disease Help Lines
NEWS

Who is calling the Help Lines of the European Network of Rare Disease Helplines?

The European Network of Rare Disease Help Lines (ENRDHLs) is a EURORDIS initiative that aims to increase the quantity and quality of rare disease information services. It does this by sharing technical tools and information resources amongst its members. One of the network actions that all members are requested to take part in on an annual basis is the Caller Profile Analysis (CPA). This year, four new European information services, from Romania, Portugal, Belgium and Italy, contributed to the exercise.

What is Caller Profile Analysis?

The Caller Profile Analysis consists in collecting certain basic items of call data from all member help lines during a predefined period and centralising the data at European level. Depending on the quality of the data received, the network coordinators can then make European-wide reports based on the analysis of the calls that help lines are receiving. This analysis can range from the very basic proportion of males to females using the service to more advanced predictive models showing emerging trends in rare disease patient needs across Europe. The data can also assist in convincing decision makers of the added value of help line services and the network as a whole.

This is the third year that this type of analysis is being conducted by the ENRDHLs. A record of eight help lines participated in this year’s exercise, these included:
France- Maladie Rare InfoService, France- AFM, Spain- Feder, Belgium- Radiorg, Portugal- Rarissimas, Romania- Information Center for Rare Genetic Diseases, Denmark- CSH, Italy- Uniamo.

Basic call information items such as ‘Category of caller’, ‘Purpose of call’ and ‘Answer provided’ are collected systematically for a month and centralised at EURORDIS.

This year the combined queries, for the month of November, of all the participants, represented 1128 queries, managed by 25 help line respondents.

The CPA summary report shows the principal reasons people are using the services. Clearly information on disease is at the forefront of callers’ needs. Along with social care and signposting these are the three most important reasons for contacting the service. “This sort of information can be very useful for ‘start up’ help lines when deciding what kind of service to provide,” explains Shane Lynam, Health Policy Coordinator at EURORDIS. “Would they, for example, like to provide a service that is orientated more towards medical information and hire a specialised medical professional or are they more concerned with social questions. When making these decisions it is useful to know the needs of callers and then adjust their project accordingly.”

The patients themselves only account for half of the queries received by the services, the other fifty percent of the queries are either friends, family members or medical professionals. The report also shows that although electronic communication (22% percent of queries) is catching up with phone contact (33% of queries), oral communication remains the more popular method. This reoccurring trend shows that email and phone services are complementary. 86% of the people calling European help lines services are female. This may suggest that women are more likely to take the first step in finding information about their loved one’s disease.

After the group analysis all participating help lines receive a report regarding the quality of their caller profile data and what changes need to be made in order to make it easier to normalise their data.

“By participating in the Caller Profile Analysis this year we were obliged to think about the type of call information we include in our database at Radiorg,” says Lut De Baere, President of the Belgian Rare Disease Alliance and help line RadiOrg. “On the basis of the CPA Report we received, we are already making changes to the information we note regarding each query we receive, for example we have started to note the ‘orpha code’1 every time we include a disease name. This sort of feedback will be useful when we are outlining the project description for our upcoming help line project.”

The EURORDIS’ web application for help lines, called Rapsodyonline, has been designed so that the group reports can be done in a more systematic way. The help lines will export their data to the network database where it will be pooled and network activity reports can be created automatically. As more and more services start using the Rapsodyonline tool the data will become robust and the results will be even more compelling. The reports can be adjusted to reflect the needs of different stakeholders.

In terms of advocacy, this type of analysis can be used by the network coordinators to argue for the development and funding of national help line services. By showing the average number of calls being recorded by each respondent, it is possible to present concrete data on what needs to be funded. This information can be essential in a situation where a potential funder may not have a complete understanding of what a help line service involves.

All members of the network will attend the ENRDHLs’ meeting on 13 May this year, where amongst other items, the next Caller Profile Analysis will be discussed. The network meeting which is a satellite to the European Conference on Rare Diseases in Krakow on 13-15 May 2010, will serve as an opportunity for participants to get to better know each other’s way of working and to discuss the future orientations of the network for better quality of information services provided.

To take part in the next CPA or register for the Workshop, please contact: shane.lynam@eurordis.org.

For more information:
Caller Profile Analysis Summary 2009
European Network for Rare Disease Help Lines – Membership Application Handbook
European Network for Rare Disease Help Lines – Membership Application Form
Fact Sheet on Rare Disease Help Lines
Fact Sheet on the European Network for Rare Disease Help Lines

1Orphanet is a European database of information on rare diseases. Each rare disease is given an orphan code number corresponding to the 10th international classification of diseases established by the WHO (where available).

This article was first published in the April 2010 issue of the EURORDIS newsletter.

Author: Shane Lynam & Paloma Tejada
Photo credits: © EURORDIS
http://www.eurordis.org/content/2009-caller-profile-analysis-european-network-rare-disease-help-lines

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